3 year old Morven Hutchison, the daughter of the lead rider, Neil, is the main reason for these cyclists taking-on this mad challenge.
Morven is a brave and angelic little girl whose sunny disposition hides the nature of a grave illness, a rare genetic condition called
cystinosis which causes impaired growth and kidney problems. At the moment, there is no cure. The symptoms can be treated but only with
unpleasant drugs that cause severe side effects and must be administered every few hours, including through the night. Morven keeps
relatively well but many are not so lucky with frequent vomiting, excess urination, and the need for stomach tubes. Kidney failure whilst
still young is almost inevitable and without improvements in available treatments, the long term prognosis for sufferers of this condition
is not good.
However, recent research, partly funded by the charity Cystinosis Foundation UK, which this event is supporting, has discovered
new physiological pathways and a deeper understanding of the condition. This in turn could lead to the development of new drug treatments and
a better outlook for Morven and her family, as well as other children with this condition worldwide. That’s where the challenge comes in.
Further funding is needed desperately to continue the research and progress drug trials which are tangibly-close to a breakthrough.